Author Archives: Mathilda

About Mathilda

The musings of a woman newly diagnosed with cancer.

Why is this so hard? ‘Negative’ gene markers

This week has been spent trying to set an appointment for my surgery. I was told that was the next step after my MRI and genetics test results came back. Since I was still waiting on the genetic test results when Monday dawned, I wasn’t pushing so hard to get in touch with Dr. B’s scheduler, Kim, who just came back from vacation

Still, I called her number on Monday, meaning to get ahead of everything but got her voicemail. I didn’t leave a message but I called again 2 or so more times, and got the voicemail, still with the vacation greeting. I chalked it up to Mondays being a busy day generally and even more so for someone just back from vacation.

Tuesday morning came and I called Kim again, getting the same vacation message that included the names and phone numbers of two people that were meant to help during her absence. Again, I didn’t leave a message. After all, I was still awaiting my genetics test results.

Later on Tuesday afternoon, the genetics counselor called with my results and promised to forward them to Dr. B, who had originally encouraged me to get them to aide in my decision making on whether to get the suggested lumpectomy or a bilateral mastectomy. According to the results, I do not have any of 9 markers they say puts one at increased risk for breast and ovarian cancers (sigh).

The gene test for cancer risk is considered ‘negative’ but the hereditary component is not completely ruled out.

With renewed determination, I called Kim, this time leaving her a voicemail message.

I was certain I would hear back from her at least within 24 hours… that’s what I consider to be a professional allotted time. I never heard from her on Wednesday.

On Thursday morning, I called her number again, and got the same greeting…”out of the office until– please reach –“. Angry, I called one of the numbers she left as points of contact when she was on vacation. This person answered on the second ring and I dove right into my complaints about Kim not being professional enough to call anyone back or even answer her phone during business hours. The lady apologized, gave a lame excuse about Kim just being back from vacation and needing to catch up with “stuff on her desk”, took my name, DOB and phone number and promised to give my message to Kim, whom she had “just” seen.

When I didn’t hear from Kim all day Thursday, i resolved to take my complaints higher. I know people can be overwhelmed but I should at least expect a call back after leaving two messages. Am I being unreasonable?

I know that if I had a different type of health insurance, I would have found another medical team to work with just because of Kim’s incompetence. It wouldn’t have mattered that I have confidence in the medical team that came together for me. This team practices in the largest and one of the top notch cancer centers in Virginia. People travel from all parts of Virginia and neighboring states to come here and my research into them has uncovered good things.

It’s Friday morning and I am headed out to take my kids to school but when I come back, I’ll be calling Kim’s supervisor or the supervisor’s supervisor because this is uncool. Setting up a surgery appointment for lumpectomy/mastectomy shouldn’t be this hard.

Supposed to be an easy weekend

After posting about my “good” MRI results yesterday, I proceeded to do some Google research on bilateral mastectomy and somewhat ended up on images. One of the ones I clicked on sent me to a blog authored by Leisha Davison-Yasol. Her story telling captivated me and I ended up reading all her posts over several years as she battled stage III breast cancer that had spread.

Reading about her surgeries, struggles, fears, pain and seeing how this insidious disease robs life, got me scared. While I’ve been encouraged by what my doctors have said about what they see in my body, there is still a nagging ‘what if’ feeling. I has a weird blood’ infection this summer when I traveled out of the country that left me breathless, literally. And while prescribed antibiotics cleared it, thinking of it now is haunting me.

As I sat reading Leisha’s blog (which, unfortunately hasn’t been updated since November 2015), I became aware of a dull, almost pain on my back. Alex Trebek, in his recent PSAs about pancreatic cancer, talked about wishing he had gotten his back pain checked out earlier. That it may have led to his pancreatic cancer being diagnosed earlier than stage 4.

Credit: LittleThings.com/India Times

My chest is also tight, my head is hurting and I also just read an entry by another breast cancer blogger, long gone, who wrote about how her diagnosed state 4 cancer spread through the bloodstream and not the lymphatic system. This was only found during surgery and wasn’t evident via other tests.

I don’t know what to make of what I am feeling. I just know that I am now in full fledged panic. What is my true prognosis?

I want my faith in God to take precedence. That if I pray for healing, that I will have enough faith to receive that true healing. But my humanity is getting in the way and I am letting fear overrule me.

I must do better. I will be working on doing better today, tomorrow, Monday and in the coming days, because I must.

Friday evening bliss

I am just happy I have lost a few pounds in the process.

This is by far the best evening I’ve had, mental wise, in the last 15 days since my diagnosis.

A few hours ago, I worked up the confidence to call the nurse navigator at the cancer center I am being treated at. I needed to hear about the MRI tests. Since Tuesday, I had been fighting the urge to call them just so I can hear that nothing (or something else) is wrong. After yesterday’s good news trip to the dermatologists that I DO NOT in fact have a skin malignancy, I was ready for equally good news today.

At around 3 p.m. EST, I called and asked if there was any inkling as to what the MRI tests showed. The nurse navigator answered her “work cell phone” immediately and was sympathetic. She told me she would try to reach the oncology surgeon but he had been in surgeries since morning so she wasn’t sure if he would be available yet.

Since today is Friday, I resigned myself to the fact that I probably wouldn’t hear anything back until Monday. But no more than 15 minutes after I spoke with the nurse navigator, the surgeon called.

Seeing the phone number with the health system’s prefix, I answered, nervous and shaking.

“Ms. Jones? How are you holding up? ” He asked.

Jeez Dr. B, how do ya think I am doing. You’ve been holding out on my MRI results, I thought.

But to him I say, “Good, how about you?”

He’s well, he says and jumps right into said results. “I have the results and nothing is different than what we previously discussed.”

“Oh my God! Thank you, Doctor B!,” I say as I let out a big whoosh of breath I wasn’t aware I was even holding.

Listen, I know a lot of people don’t believe in God, but I do. I am not God-obsessed, but I do realize that we didn’t just get to exist in this world without a higher power. I talk to Him (not a she in my book) several times a day and in the last two weeks, I’ve talked to Him a bajillion trillion times a day, asking him to spare my life so I could raise my children to adulthood. So yes, I thanked God for answering my prayers and I thanked Dr. B, as well, for the good report.

Dr. B said the surgery scheduler ( I forget the title he used) he works with (Kim) was out for the week and he already had my information ready for her when she came back in Monday so she could work on scheduling my surgery.

The rest of the conversation was mundane and we bid farewell shortly thereafter. I almost dialed my mom’s number to let her know the good news but then I remembered that my kids were upstairs and typically eavesdrop on my conversations. Especially since they think I have a boyfriend after I told them in September that their dad and I decided to separate again.

So I tabled letting my mom know the MRI test results until I made my way to her house. My daughter wanted me to take her to the hair store to get some hair for braiding, so I figured I could drop by before heading back to our apartment.

I was practically soaring as we completed our errands. My mom was happy with the news. We seemed to be of the accord that every victory must be celebrated. We discussed the surgery and agreed that a mastectomy was probably the better option for me, just for peace of mind and not having to worry about a recurrence.

After the short visit with my mom, my kids and I had dinner and this time I actually enjoyed my meal and even had dessert– a slice of German chocolate cake from my birthday that we had saved. The thought I saved it in the freezer because I am on a diet but the reality was that I was scared to eat it. I’ve heard a great deal of scary stuff about cancer loving sugar. I am still educating myself on the best diet for this thing. Meanwhile, I am just happy I have lost a few pounds (8) in the process, notwithstanding the stressful reason why.

So I get to have a blissful Friday with my children, minus the wine I’ve always enjoyed, of course. But It’s shaping out to be a great weekend.

Monday will bring what it brings, but for now, I am content.

Dermatofibroma sounds so much better

Not my picture, but this looks like my bump.

While my MRI results are not back yet, I’ve been breathing easy today after my visit with the dermatologist revealed that the bumps on my leg are benign dermatofibromas and not some kind of skin malignancy.

Never heard of the term before, but it is apparently “a common type of benign skin tumor that is small, slow-growing, typically firm, red-to-brown bump, seen most often on the legs,” according the literature the dermatologist gave me.

I can now go back to worrying solely about the recently diagnosed malignancy in my left breast.

Reeling

The night before my MRI was mentally tough. I managed to convince myself that I probably had lung issues that would probably show up on the MRI. I am still awaiting the MRI results and I am not any better.

I don’t understand why it takes so long to hear back about the results from the doctor and/or his team. It’s Tuesday today and MRI day was Friday. Shouldn’t I have heard back by now? I don’t like this feeling of losing control. I can barely sleep three hours straight before waking up in a state of panic.

I’ve always been somewhat of a hypochondriac, for example that a headache lasting 2 days means a brain aneurysm, but now, with this DCIS diagnosis, I am a blithering idiot.

I have a couple of raised spots on my legs and I am now worried about melanoma. So much so that I’ve made an appointment to see a dermatologist this week. It doesn’t matter that I am dark-skinned black person, so my chances of getting skin cancer are low but my proximity to infrared heaters during harsh winters gotten me extremely worried. I can’t even tell my mom about this new worry yet because she’s lost her peace of mind lately, just like I have.

The results from the genetic testing will take 1-2 weeks.

On top of this, the results of the genetic testing I initiated yesterday won’t be ready for a week or two, which means that surgery won’t be performed until they are back. This is because a positive hereditary gene for cancer will help me make a decision on whether I go with the doctor-recommended lumpectomy or a bilateral mastectomy.

Nothing seems to be moving at the pace I want it to. And my mind is telling me all kinds of extreme things. Mainly that I’ll be dead sooner rather than later and that my kids will never forgive me for that.

On some level, I am embarrassed to be having all these thoughts because I am supposed to maintain my faith as a Christian. If I am praying to God to use the doctors to help me beat this health challenge, then why I am accepting of death? The only answer I can come up with is “oh ye of little faith…” I have to up my faith level, plain and simple.

The MRI conundrum

These earplugs were supposed to help minimize the MRI machine’s noise level.

First time in an MRI machine yesterday. I was accompanied by my mom and my younger sister and her two little kids. I love when they are all around me as it gives me a sense of normalcy… I don’t have to keep thinking about my issues.

We arrived at the MRI location on time, around 11 a.m., the parking lot was parked with other patients and their friends and families, some of them going to the adjoining heart center, while others were going to the cancer center. I walk in and thankfully, there are only two patients ahead of me waiting for MRI.

After registration, I am called to the back in less than 10 minutes, soon after the two patients, allowing me to conclude that there are at minimum, three MRI machines.

My mom has to remain in the waiting area so I go to the dressing room alone with a male tech who provides a pair of scrub pants and a couple of hospital gowns I must wear, one front facing and the other back facing. The tech leaves.

For a few moments, I wonder if the scrub pants will pass through my thunder thighs and manage to cover my humongous butt. Thankfully, it does. I call the tech back in and tell him to please take my mom a blanket as this place is cold and I know she gets cold easily.

I am cognizant of how much I am shivering because of the cold dressing room but I am more focused on how worried I am about how my claustrophobic self will make it for 30-35 minutes in the MRI machine. I’ve been known to suffer panic attacks in tight spaces. But this is important, so I must ‘get with the program’.

We leave the dressing room and head to what looks like a phlebotomist’s chair. There, the tech (or should I say nurse?) inserts an IV thing into my arm. We then walk a few feet to the room where the MRI machine and two female techs are waiting. The male tech/nurse leaves.

They give me a run down of what is expected of me — I’ll be subjected to 20 minutes in the machine before they introduce a dye into my veins, then I have to endure another 15 minutes. I am told not to move during those 35 minutes so they can get clean images. They offer to play my choice of music during the process — they’ve been listening to 60s music, and do I have a preference? Sure, I say, let’s play the 80s. Some Rick Astley and old school Madonna will do me good, I think.

COURTESY: SASH Vets. My butt was sticking up like this poor animal’s but the entire upper part of my body was inside.

They shove some earplugs into my ears, since the MRI machine is apparently loud. I have to take off the back facing hospital gown so that my boobs are exposed. Then they ask me to climb onto the machine and lay down on my belly. It’s uncomfortable, especially in my rib area, the machine parts are digging in somehow, so they add some padding. It helps some, probably about 15 percent better. I want to get this over with so when they ask if that’s better, I say yes. They place some headphones over my ears, on top of the ear plugs they previously gave me then they move me into the bowel of the machine, with my arms up towards my head, like superman’s when he is flying, my boobs hanging over a couple of well placed MRI machine holes and my butt sticking up and facing their general area.

My eyes are shut tight, I don’t need to see my surroundings… I am working hard at keeping any panic attack at bay. Meanwhile I begin praying. I repeat “I plead the blood of Jesus for a good outcome” over and over again. Sometimes I even sing the song “I Plead the Blood” by Charles Jenkins and Fellowship Chicago.

It seems like 5 minutes has gone by before the aforementioned 80s music begins to play. By this time, the noise emitting from the MRI is making me dizzy and I am getting hot. I don’t know if I’ll survive the remaining minutes. It’s a mental battle trying to remain still and calm. I continue to pray feverishly.

Time passes, the music is not enjoyable at all. I am hoping the 20 minutes before the dye is introduced passes quickly so I can get a break to cool down, rest my achy arms, as well as scratch my itching nose and leg. It never comes, they never talk to me like they said they would.

Before I knew it, I was being rolled out of the machine and the whole thing was over. The techs wondered why I didn’t respond to them when they talked to me, I never heard them, they’ll have to figure that out.

I was done for now and I didn’t have a panic attack so I was okay for the moment, despite the ringing in my ears and the dizzy spell I had. I relaxed for a couple of minutes before getting up, going to the dressing room to reclaim my clothes and rejoin my mom and sister.

I could once again inhale and exhale easy, at least until I get the results on the MRI.

Finally! Easing my worries

Talk about having a tense day. Better yet. Having a few tense 5 days.

I had my first meeting with my oncologist and his team today as well as with the team of radiology doctors who will work with me should my pathology results come back with a need for radiology treatment. I have been told that the way things look now, I most likely will not need chemotherapy.

I must say, this group of professionals eased a lot of my worries.

I am still learning the cancer lingo, but the doctors said this invading marauder is at stage 0. They also described it as non- invasive, ductal carcinoma in situ, which they said means it’s sitting in its original place and hasn’t grown beyond the milk duct it’s sitting in.

The oncologist showed me my mammography pictures and where the marauder is — I am thankful and I am praising God that it’s small compared to the mass of the breast. He described it as a few grains of salt.

I am super thankful also that the breast imaging experts I saw on Oct. 1, who looked at my mammogram actually saw this abnormality. When they say that early detection saves lives, it’s not an exaggeration.

I’ve always been very aware of the push for early detection in October as Breast Cancer Awareness Month. I’ve walked in numerous local American Cancer Society October walks where pink is queen and cancer slayers congregate to raise funds for research. I hope that push continues and that wherever the funds end up, they do good.

Next for me is a chest/breast MRI later this week. Hope I can overcome my claustrophobia without the need for anti-anxiety medication (I was told ativan can be administered).

Next will be genetic testing and counseling, next week, to determining if something in my genes caused this, although I am the first person in my family to be diagnosed with breast cancer.

Depending on the genetics revelation, surgery will come next, most likely a lumpectomy. Should the gene testing come back with cancer causing genes, I could opt for a mastectomy. It’s a wait and see game.

For now though, I am thankful to finally have some answers — this cancer will probably not kill me, says the doctor. For the first time in 5 nights, I will finally be able to sleep on my left side again without fear of squishing the marauder out of its duct (rational thinking is out the window).

What about other cancer risks

Today, I have the annual gyno appointment I made towards the end of September. I hope everything is okay — it wasn’t last year.

At last year’s exam, my pap came back as abnormal, and showed signs of abnormal cells called dysplasia. They are considered to be precancerous. My ob-gyn later performed a colposcopy then recommended that I undergo a LEEP precedore — Loop Electrosurgical Excision Procedure. It’s a treatment that prevents cervical cancer. 

After last year’s procedure and seeing how my mammogram came back clear during last year’s annual exam, I would never have expected this year’s mammography results. I always thought my cancer risk would remain in my cervix. Dumb, I know.

Also, after last year’s LEEP procedure, I should have had my IUD removed. I should have lost weight. I should have minimized my stress. I should have adopted a healthier diet. I should have adopted a regular work out schedule. I should have never…

Boy, the regrets weigh heavy on me. I shouldn’t dwell on them too much, but at the same time, they could serve as a powerful reminder to someone like me, like I was last year.

Body like Serena

I recently ordered 30-lb free weights.

Towards the end of summer 2019, I really wanted to finally be successful as losing weight and getting stronger, but I feared that I would get lose skin. I remember talking with my siblings and mother and expressing my thoughts and fears.

My older sister, who is a fitness professional, encouraged me to go for it. It is totally possible to get a body like Serena Williams, the well-known tennis pro.

I decided the best way to realize success was to publicize what I was doing to people I know by blogging and video taping my progress. I wanted to replace the fat in my body with muscle. But first, I had to make sure I looked decent so I wouldn’t embarrass my mom. I am the kind of girl that goes to the gym looking like a hobo.

  • My unused phone stand.

So in September I ordered some workout clothes, shoes, a used treadmill and even a phone stand so I could easily video my progress. I was all set to begin after I was done with my doctor’s appointments and annual physicals.

So here I am with over $300 worth of gear that I may never use. I am hoping my prognosis is good on Tuesday so I can still look forward to using everything I ordered once I begin to feel better after surgery, chemo, radiation and whatever else my treatment calls for.

Emotional start to this day

I was up at 6:30 this morning to work and I’ve been quite emotional. I keep thinking that I won’t be around for my children as they grow into adults.

I know that death is inevitable and I planned for it the best way I know how, by buying and paying for life insurance to benefit my children when I am gone. However, because I’ve been healthy my whole life, I didn’t anticipate facing cancer and questioning my mortality before my kids were grown.

Oh, there’s always the possibility of getting shot to death by a mass killer while doing the most basic of life tasks, or many other possibilities, but I live such a boring life and I hardly go anywhere but the grocery store, I thought those chances were minute. Now, I just don’t know.

I’ve been reading a lot of breast cancer survival stories. It’s a war. And I am willing to fight it because of my kids, my mother, family and others who love me.

Being raised a Christian and maintaining my belief in God thus far, I have been in constant prayer, just asking God to have mercy on me and allow me to be around for my children.

I hope my day improves. I am working from home, so I don’t want my kids to see me like this when they wake up on this rainy Sunday.